Monday, February 28, 2011

Cole Has Moved!

All images ©2011 Bobby Acree

Have you come to visit Cole? Well, come on over to his new home. We would love to have you visit with us all!

Cole's new address is over at . Just click on this link and save his new address for new updates!

We hope to see you soon...and often!

Tuesday, August 3, 2010

Help Wanted!

There are some days that we wish that we could get just a little bit of decent help! Today has been one of those days for me!

This morning I found myself making the 1,953,743rd phone call to one of our fine (NOT) state agencies. Is it REALLY too much too much to ask these workers to see my disabled child as a person instead of just a piece of paper or a number to push (or NOT) through the system?

I would love to figure out a way to truly be able to make it a "collaboration" between state agencies, insurance companies, providers and ME (my child's advocate)! I have NO IDEA how to make that happen!

Cole was born in February of 2007. Around November, when he was 9 months old, we were told he had cerebral palsy. After many hours of research and questions and 'just through the grapevine' I was informed there were some options for financial (touchy subject) assistance to help us to help Cole.

TEFRA, a Medicaid supplement plan that helps with deductible and coinsurance and some denied services from our insurance plan, is one of those options. After jumping through all specified hoops and time spent waiting in the state offices, I then submitted the application signed by Cole's doctor, the SSI letter I received, a copy of ss cards, insurance card & birth certificate. This was in April 2008.

We were assigned to Mr.R through DHS (department of human services). After many months of unreturned phone calls and the occasional request for additional information from Mr. R, I had no idea what I needed to do next. In August 2008 I received a letter for more information (medical records, doctor bills, hospital stays etc). I get all of this paperwork together AGAIN and send it.

I never quite knew what to do or expect as far as a 'time frame' (Mr. R was sure to say to me with every conversation, in a slow Eeyore like monotone, "I just had a case that took over a year." and would reassure me that our effective date would be retroactive 90 days previous to when I applied) so I patiently waited through the holidays with no contact. After the first of the year I once again started checking with Mr. R but he never had an answer for me.

Some time in May 2009 (I think), during a meeting with my Sooner Start Rescource Coordinator, Ms. M, I had explained this situation and she was kind enough to try to help me.

Once again I had to get additional paperwork together (some being duplicate of what I had sent in August, some being updated medical records and bills). I made multiple copies, sending them to Ms. M. She kept a copy, mailed a copy and hand delivered a copy. I also have a copy. Ms. M also spoke with Mr. R's Supervisor. Then a short time later Mr. R passed away.

During the time that Mr. R had Cole's case, Mr. R had at one time told me Cole had been approved and even gave me his ID number. After contacting providers so that they could bill, one of the providers was very kindly concerned because they thought Cole had passed away. I contacted Mr. R only to find out that that number had belonged to another little boy that had passed and that it was given to him (to give to Cole) in error. Imagine how that would make you feel as a parent!

Since that time, Cole's file has been passed off to at least 3 other workers (may be 4) in that office and I have had to send more paperwork AGAIN, which included another application, copies of my driver's license, Cole's birth certificate, social security card & insurance card...and more medical records which I have to request (and pay for some) from providers. All of which they should have had. This was sent on February 23, 2010 to B, another DHS case worker.

I last called B on March 30 and after much coercion she contacted the TEFRA office. She advised me that 2 ladies are working on Cole's file but she did not have an answer for me as far as if he has been approved or not. She stated one lady has completed her part in the decision making but the other was out of office ill. I asked her for their names and numbers so I could follow up another day. She advised me that she could not give me that information. This seems very odd, but  I asked her to please try again the next day. As of April 1st, I had not heard back from her.

Our providers have been so patient but also are concerned about how they will bill back that far as they state they can only bill back 1 year. I was told that due to special circumstances (the DHS workers taking so long, not me) that the providers could still bill TEFRA.

About a month ago we FINALLY received an in-home visit from a nurse and was advised we should hear something and/or receive Cole's ID card within 2 weeks.

THEN....the 1,953,743rd phone call this morning....

Only to find out they decided to make his TEFRA effective as of February 1 .....  2010!!!

Meaning all deductibles (for 3 years), all 10% of every hospital, therapy, doctor, and medical equipment bill, and all charges that my personal insurance did not feel was a medical necessity for my baby, for the past 2 years ...we will be out of pocket for.

We hate to have to ask or accept any help to take care of any of our children as we feel it is our responsibility, but having a child with special needs has forced us to ask AND accept whatever help we can receive, especially when one piece of equipment (wheelchair) costs as much as a car (over $10,000).

To top it all off, I had asked B how long she has had this approval and ID information. The first words she said were an excuse that she had been ill. I asked when I could expect the actual ID card and THEN she advised me it would be sent after it was certified…which she “thought” she had done yesterday. Again I felt like to her my baby was just an unimportant number that could be certified whenever she felt like getting to it, instead of thinking of how important it could be to help us.

Thursday, June 3, 2010

Local Sports Association to Help Cole!

I am still in shock....and giddy!

Every year our local sports association, EASI, holds a baseball tournament in honor of baseball player Greg Biagini that passed away October 3, 2003 from kidney cancer. EASI always asks for recommendations from others if they know of any family that could use the assistance of this benefit.
As you may, or may not know, WE are one of those families. This is a subject we honestly try not to dwell on or to bring to the light of others. We do NOT like to ask for help! God has humbled us and we have had to learn to put our pride away and ask for a little help from time to time when he sent Cole to us. This happened to be one of those times. So, my sweet husband, sent the following email to the sweet lady that requested the recommendations.

In case you are still looking for families that may need some assistance, I may have one that you haven't thought of. Here is a chance to help one of your own. This family just happens to be my own. Over the last three years we have learned a lot about what it is like to have children with disabilities. As you know, my youngest son, Cole, has Cerebral Palsy. It has been a challenge for us to keep up with his necessities, both in therapy and medical needs. He takes four different medications and with all of his medical equipment (walker, feeding chair, manual wheelchair, and power chair coming later this year) and sending him to Special Care, a school to help integrate the disabled with the typical child, as you can imagine the cost is astronomical. We have survived by asking for donations but most of these have dried up because of the economy. Even with insurance helping, we are finding that keeping up is a very daunting task. We have also learned that you don't get if you don't ask, so, with that being said, if you are still looking, we would like for you to consider our family.

Thanks for all you do!!!!


Joe and Leanna Keathley

We have been blessed!
There are no words eloquent enough to express our gratitude to Terri, EASI and/or to all the awesome volunteers that help keep this benefit tournament going every year....and for choosing US for this year!
This all could not have come at a better time for us! With the economy being like it is right now, we were trying to figure out a way to be able to continue sending Cole to Special Care as we are unable to pay his tuition along with other things Joe mentioned.
Here is the email that EASI sent out about the tournament! If you are in the area and want to come meet us, we would love to see you!

We will holding the Biagini Benefit tournament on June 5-6! This is a great tournament for the kids as there will be a homerun hitting and baserunning contest, cookout, auction and great tournament t-shirts, along with a 3 game guarantee! This year we will be helping a family in our league who's child has cerebral palsy...this is an opportunity to play in a great tournament along with helping a family that has participating in our league for some time. To sign-up, please click here and fill out the registration form. We are offering a 50% coupon (see below) to our league teams towards the registration fee for this tournament, so please come join the fun and help one of our own. This tournament is also worth DOUBLE USSSA points also!
We are also offering a contest between now and June 5 - the team that raises the most money to donate to the benefit will get to enjoy a team pizza party to be used at a date and time determined by the team! The contest is open to all teams, whether you are able to participate in the tournament or not!

We are also looking for any auction items that you, your company or a family on your team could donate! The amount raised for the auction will be included in the contest to see who raises the most money. If you can donate anything, please contact Terri at 340-5300!

Monday, December 14, 2009

Heaven's Special Child

A very good friend of mine was reading Dear Abby and thought of ME (and My Special Child) when she read this.

Heaven's Special Child

A meeting was held quite far from Earth
It was time again for another birth
Said the angels to the Lord above:
"This special child will need much love
His progress may be very slow
Accomplishment he may not show
And he'll require extra care
From the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
So many times he will be labeled
"different, helpless and disabled"
So, let's be careful where he's sent
We want his life to be content
Please, Lord, find the parents who
Will do a special job for You
They will not realize right away
The leading role they are asked to play
But with this child sent from above
Comes stronger faith, and richer love
And soon they'll know the privilege given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is heaven's very special child.

Sunday, November 1, 2009

Riding “Hippo’s”

Cole on Smokey
Cole is riding hippo’s for HIPPOTHERAPY!
“Hippo” meaning horse from the Greek language. This is a form of therapy that uses the movement of the horse to aid in physical, occupational, and speech therapy.
Our days of auquatherapy have come to an end due to insurance. It is so true that when one door closes another door opens. We will miss our fun water ‘play’ but it was an awesome experience watching Cole on top of Smokey.
We were lucky enough to find this facility, Coffee Creek Riding Center, a member of the North American Riding for the Handicapped (NARHA), that offers this once the child reaches age 2 1/2. We went in for an assessment to see what will be required for Cole (and what he can do for himself…if he could even stay up on the horse).
Our first step (after the paperwork, of course) was to introduce Cole to the horse. Originally we got to meet Dusty and got to brush Dusty’s mane. Some of the brushes we used, Cole had a hard time hanging onto, but he finally got the idea and grabbed on to the brush.
Cole playing games!
As Cole sat on Smokey the team would guide the horse to walk to different centers. At each center there was a flat circle of a different color and a snap together plastic ‘bead’ of that same color. They would hold the circle up and Cole would have to hold the bead and place it on the circle. Another game they played was to put a small toy inside a box. One of his favorite games was shooting (or dropping) a ball inside a big net. Cole liked this one and he would try to eat the ball.
090925-142052 Cole shooting a football into the net.
At the end of his session Cole had a race with another little boy, playing ‘Ready, Set, Go’ and again with ‘Red Light, Green Light’ and each child won once.
Cole had a great time riding the horse and didn’t realize he was ‘working’.
Our normal schedule will have Cole riding every other Friday, unless there’s a holiday. I wanted to see the difference in his first time to ride and the next, if there was one. I had previously written about Cole wearing Theratogs. These really help with him using his core, reminding him to use those muscles. Unfortunately on our first visit he apparently didn’t want to wear them as he did the typical ‘boy’ thing and peed on them as I was getting him dressed for school that day.
On his first ride he was pretty “floppy” so they wrapped a support belt around his waist that helped a little. On our second visit I made sure I changed him faster that morning so he had his Theratogs and the support belt for that ride. I could see a noticeable difference in his posture.
IMG_0619 023-1 IMG_0604 008-1
Cole got to ride Opie for his second visit. We did the same routine of brushing and petting Opie as we did for Smokey on our first visit. In the pictures above Cole is meeting Opie and then placing something inside a small green cube. Below he is placing a yellow plastic bead on a yellow square and another learning activity.
IMG_0607 011-1 IMG_0605 009-1
Cole is loving riding “hippos”! Unfortunately we don’t have the space (or the training) for hippotherapy or just riding (keeping) a horse at home, but he loves our version at home too.
IMG_0597 001-1

Sunday, August 23, 2009

5 Little Monkeys Jumping on a Bed

Cole is now 2 1/2 years old and he still can not talk.

I love this video of him playing the “5 Little Monkey’s Jumping on a Bed” game on the Dynavox. You can see he is so excited and he wants to interact with it. He is squealing in delight.

As you may know, if you have read previous posts, we have been teaching Cole ASL as taught on the Signing Time DVD’s.

Cole is very bright and it is obvious he knows what WE are signing to him. There are even some signs that I think he is attempting. But, we don’t want to close any doors and will try ANY means of communication with Cole.

The above video is from when the Dynavox representative came to see if she thought Cole would even be able to use this device. She (Neala) was very kind and patient and feels like Cole is very capable of using a communication device.

With this particular device we have SO many options that would assist Cole. We first tried using the eye scan method. This was very cool. A ‘scanner’ (of sorts) was attached to the bottom of the device and could read both eyes and Cole would be able to scan/choose what he wants with only his eyes.

Well, he would be able to use this IF his abilities made this his only option. This method will not work for Cole as his head is too floppy and he would not be able to hold his head up straight enough to consistently look at the box to choose what he wants.

Another option would be to use a ‘switch’. This looks like the big red ‘Easy’ button that you may have seen in the office supply commercials. Typically this may be located around the head area. Again, I’m not sure this would work for Cole due to lack of head control and….he is a bit claustrophobic about things around his head and would probably completely freak out. Although, we could use the switches for his hand and/or feet. He loves to use his feet so that may be an option for him.

We prefer, and think Cole does too, the last option of Cole simply touching the screen to choose what he is wanting the device to say for him. He does tend to drag his hand and is not completely accurate right now. We think this will improve with practice.

In any case, it is very obvious that Cole is a very smart little boy and he WANTS to use his hands to use this device.

The Dynavox is awesome! It can start out very simple and can grow with him as he learns to talk/form sentences. We can download books (which he totally LOVES) and music (LOVES just as much) and videos, etc.

We are praying that some day his mouth and head and trunk muscles (very low tone) will some day be strong enough that he will be able to talk. If this never happens, then we just want him to be able to communicate his needs and wants and thoughts…in whatever manner that may be.

Thursday, July 30, 2009

Special Friends at Special Care

I have mentioned before how much Cole loves being at Special Care School and we love the services they provide.

While Cole is at school they work with him and he is seen by his team of therapists. They are truly amazing!

His therapists are Suzanne, Joan (at the school-physical & occupational therapy) and Lindy (from our state’s early intervention program-speech & swallow therapy) & I take him outside of the school to see Lisa (for swim therapy).

Joe found this article in the paper that covers Cole’s school and I wanted to share. As you will see, they have a great facility and they do great things with what they have! Below is the article from The Oklahoman:

Oklahoma City special care center’s best worker isn’t human


Special Care Inc. recently hired a new employee, and he instantly became the most popular worker.

Featured Gallery

He’s also one of the busiest at the northwest Oklahoma City center, which primarily serves disabled children.

He works a 9 a.m. to 6 p.m. shift Monday through Friday, and he only takes one break, for lunch at 4 p.m. He helps kids during physical therapy. He takes them out for walks. He even tucks kids in at nap time.

But you won’t ever hear him brag about his work.

Costa, a 2-year-old black Labrador retriever, has been on staff at Special Care for a little more than four weeks, and Pam Newby, the center’s executive director, said he’s been an invaluable addition.

"We really strive to provide the very best in cutting-edge treatment for our kids, and he’s really helping us do that,” Newby said. "The kids just love him. Even the babies love him.”

Special Care serves about 135 children between the ages of 6 weeks and 19 years, and helping so many can be taxing on a staff of 35. But Costa has made all jobs at the center more enjoyable.

Long process

Newby went through a 10-month process to get Costa from Canine Companions for Independence in Oceanside, Calif.

She sent in an application and then had a phone interview. Next, she had a face-to-face interview via the Internet so officials could make sure Costa would have a good home after his workday.

Following that, Newby went to Oceanside for a two-week training program in June to get acquainted with how to work with an assistance dog.

Katie Malatino, a public relations coordinator for Canine Companions for Independence, said the group spends roughly $45,000 training and preparing each assistance dog. The dogs are then given free of charge to agencies that pass the application and interview process.

All Newby was responsible for was her transportation to Oceanside and providing for Costa’s living costs and routine visits to the vet.

Since arriving at Special Care, Costa has been instrumental in helping the kids, said Suzanne McQuade, a physical therapist at the center for 14 years. The main thing Costa does is provide motivation for kids to do better in their therapy.

But the most impressive thing about him is how he stays calm around so many people.

"The kids will sometimes pat him a little too rough or they might accidentally kick him with their foot when they’re walking because they don’t have good motor control,” McQuade said.

"He stays on task and focused and disciplined no matter how unpredictable the children are in their movements.”

Getting a co-worker?

Newby and McQuade said one of the first things each kid asks when they get to the center is, "Where’s Costa? Can we pet Costa?”

But Newby said she notices Costa is tuckered out when she takes him home at the end of the day.

Having more than 135 pairs of hands eager for attention every day can take a toll on even the most diligent of workers.

Because of Costa’s impact on everyone involved with Special Care, Newby said another canine companion could be on the way. She didn’t have an estimate as to when that could happen.

"I think there’s room for one more,” Newby said.

"Costa helps us serve our kids better, and that was the whole goal when we decided to get him.”

Related Topics: Health and Fitness, Medicine, Medical Treatments and Procedures, Physical Therapy